Something weird happened last night. I had 8 + hours of sleep. My neurologist and programmer for my DBS said increased sleeping times can be improved by the surgery at my programming session last week, but i never expected this. Hope the improved sleep length continues.
I have had unfortunate side effects with my legs but have been told these can be adjusted at future programing sessions.
Fingers crossed.
Good luck with everything, I will live or should I say sleep vicariously through you!! Hope that made you laugh!!
I'm curious, I noticed you're from Colorado--do you know anything about the dbs center at Englewood? I can't think of the name of it right now but the person who works with dbs is named Sierra. I have had dbs also, not a lot of help as of yet.
what were your leg issues. One of my issues that has arisen since the surgery is difficulty walking.
i had trouble walking too, although i didn't have DBS . i have psoriasis in the back and sciatica in my legs.
i was sent to a PT to straighten me up. and learn how to walk right. when ever the pain starts i know that i'm walking wrong, and have to go back to my therapy sessions, and what i learned. and then it feels a heck of a lot better. i didn't say it was easy, but it does work. i used to have such pain walking, that i didn't know if i would get back in the house. today i made it back with no problems.
My issue is my right leg and foot wandering off on its own. Basically it's dyskinesia & very annoying when I try to drive. However we are working on fixing this with further programming; I would recommend a visit to my programmer Sierra Farris. They do a lot of rescue programming to help people. centerformovement.org/. Sierra Farris is the PA who is doing my programming and Dr. Giroux is a neurologist. I recommend them both highly.
I have been thinking about going to her movement disorder center to tune up my dbs--I have dystonia mainly in my left leg. I don't know if this is common in PD or not. But you think it's a good place to go?? I live in Idaho, so it's a bit of travel.
Hi ancee, I live in Utah & I'm wondering if you tried SLC? I'm thinking about DBS Are you glad you had it done?
I had my dbs there at University of Utah . Very good team -- surgery went very smoothly. My problem is dystonia, so my dbs was the gpi instead of the stn which is easier to get results. I think I just need someone who can work with me until we get the "sweet spot" on my settings. I would do it again, because that was the best hope of prolonging the inevitable, What are your symtoms?
Hi ancee, sorry it's taken so long to respond & thank you for your response. I don't know the meaning of either gpi or stn?
My symptoms are mainly on the right side with my leg & arm in a lot of pain. My foot & hand go into claw mode when my meds wear off. I have tremors on both sides & dystonia. I also have insomnia, constipation & I am always tired. I get dizzy a lot & I have low BP. I was diagnosed about 2010, when I was 55.
My Mom had PD and died at 75. She started to show signs of PD but we didn't think she had it, but now I know she did but she also had several small strokes.
If I knew then what I know now, I would do things differently.
I have had Dbs and have also been on 14mg of Ropinerol xl, which I have weaned myself off over the past 2 months, I am now sleeping very well, best since I have had PD (10 years). still on rasalagiline and sinemet.
However since DBS my balance and walking have got a lot worse, how aare you suffering with your legs?
Sierra has helped with leg weakness. walking on the outside of my foot. almost dialed in. Maybe one more session. improved my balance. she is amazing.
Well worth the travel. I'm sure they can help. Call for appointment first
don't go sleeping through me vicariously, last night was not much better than normal however I did not take my Flomax so was up several times going to the bathroom. Will see how tonight goes. I'll let you know if you can start again.
Dave’s REM Sleep Behavior Disorder (and sore shoulder) Protocol
levodopa and sleep
Sleep
